Duchenne muscular dystrophy

Benefit slated for teen with incurable disease

By the time Cameron Thurman started kindergarten, those around him noticed something wasn't right.

He was a slow runner and often fell.

A teacher suggested therapy. Then a pediatrician noticed Cameron's unusually large calves, a common sign of a muscle-wasting disease that affects roughly one in 3,600 boys.

Duchenne muscular dystrophy, which ultimately leads to death in early adulthood, has no cure yet.

"You just kind of sit and watch and know that there's nothing you can do," his mother, Lori Thurman, said. "You wake up, and he's there, and you realize you've got a miracle for another day."

Cameron, who will be 15 in September, is now wheelchair-dependent. He's in need of constant care and expensive medical devices to help him do even the simplest bodily tasks, such as coughing.

Realizing that need, his aunt, Lisa Kennedy, decided to organize a benefit, which is scheduled for 10 a.m. to 4 p.m. Saturday, Aug. 17, at the Johnstown Recreation Center. The hope is to raise enough money to help the Thurmans with a down payment on a handicap-accessible van, which could cost more than $30,000.

The event will feature a bake sale and raffle, with sponsorship by the Johnstown Athletic Boosters. Members of the Johnstown High School football team and cheerleaders are expected to be at the benefit.

Local businesses are providing gift certificates, and other vendors will be there to donate a percentage of their sales to the cause.

"He's a phenomenal kid, and it's breaking our hearts to see this happening to him," Kennedy said. "We just feel like his life is going to have a great purpose. He never feels sorry for himself. He's a very bright and happy kid who doesn't complain, even though we know he's in a lot of pain."

As the disease begins to progress, muscle tissue eventually is replaced by fat and fibrotic tissue. Loss of movement is followed by paralysis and heart failure.

Cameron suffers from osteoporosis in his spine.

In the middle of the night, his mother awakens several times to turn her son because he isn't able to do so.

Thurman, a graduate of Johnstown High School, quit her job when Cameron lost the ability to walk. Her husband, Bob. Cameron has two older sisters.

"I've spoken to groups about what Cameron is going through," Thurman said. "Imagine you don't have any strength to the point where lifting a can of pop is too heavy. He's just like every other little boy, but he doesn't have the body to do the things they can do."

Until recently, Cameron was shy about being around others. He didn't like the stares in his wheelchair.

A fan of Xbox, Transformers and Star Wars, he recently went on a tour of Lucasfilm Ltd. studios near San Francisco, thanks to the Make-A-Wish Foundation.

"He's been excited about getting out to see people," Thurman said. "He'll be selling candy bars at the event. He's very grateful for all the support, and our family is truly humbled by those who want to help us."